Why I’m No Longer Using the Word Grief When I Talk About Autism

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Ever have a life event that kind of smacks you upside the head and makes you realize you were really wrong about a certain way you viewed something? Two months ago I attended a wake for a child. I still think about that little girl and her family daily. The experience taught me in a way I didn’t expect about how I view autism.

I can no longer say I know grief. I do not. Not by a long shot. I know I have written about finding out your child’s autism is a grieving process. I know I’ve read similar posts talking about mourning the child you thought you had only to discover autism “took the life you thought you had away.” No it didn’t. Not at all. I know this because although my child is autistic, he is here. He is making a mess. He is playing with toys. He is singing the flipping “Bird Is the Word” song for the 739th time today.

He will need several prompts to finish chewing his food fully so he doesn’t gag. He will need reminding not to tease the dogs. He will be scared if he sees me so much as open the kitchen cabinet with the blender in it.

But he is here. I can laugh and sing with him. I can high-five him passing in the hall. I can sneak into his room at night after coming home from a funeral home and kiss the top of his head as he sleeps.

So yeah, life isn’t what I had planned, but no life is. Seriously, the life you see others living, the one you envy — even to them it’s not what they expected. Both good and bad. Maybe what I feel at times is self-pity, frustration or disappointment. Perhaps a grand combination of all of the above. For me, I know it is not grief. I choose not to use that word anymore in regards to autism and accepting my child’s diagnosis. It’s not a grieving process. It’s an acceptance process.

It’s an insult to compare it to losing a child — one I won’t do anymore. Or “mourning” because he is still here. Yes, it’s more work on my plate than I ever expected or even wanted. I’m grateful for it because some parents don’t have that luxury of complaining because they actually lost and buried a child. They are the ones who have the right to grieve, to mourn for a life they can no longer watch and help develop.

I’m not saying this anymore. I’m not asking or declaring you to do the same. All I ask you to do is hear me out. Is your child still here? Then you currently have more riches in your life than others do. I’m not telling you not to be sad or angry or frustrated with your situation. It would be utter madness for me to even suggest it. Hell, you don’t even have to like it sometimes. I just know what I felt when I hugged a mother recently who had been preparing herself to accept a lifetime of medical challenges for her daughter only to now greet us at her child’s wake at a funeral home.

I’m not declaring a right or wrong for anyone but me. Maybe you’ll agree or maybe you won’t. I just feel it’s important to acknowledge when I was wrong and how I plan to change it.

Follow this journey on Autism With a Side of Fries.

Lead photo source: Thinkstock Images

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My Child’s Disability Is Not a Death Sentence

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A few years ago a friend sent me a frantic message on Facebook. She was concerned about her child’s physical development, and she wanted to run a few things by me — her chief concern was that her then toddler daughter had started walking on her toes. Mom was a little freaked out.

My son has mild cerebral palsy, and for reasons I can’t entirely fathom, sometimes people I know assume this means I know Everything There Is To Know About Cerebral Palsy and they’ll occasionally ask me, instead of their child’s pediatrician, about medical conditions. Spoiler alert: CP is a huge spectrum, there’s no way I know everything, and you should always just ask your kid’s doctor.

This friend had recently suffered her second (or third) miscarriage, and I assumed she was in a delicate space. So when she followed up my reassurances that simply walking on your toes doesn’t mean you have cerebral palsy by writing something like, “Oh good. That’s what my husband said, but I was convinced she was dying,” I tried to be compassionate. In fact, I tried extremely hard to summon every bit of compassion I have in me so I could resist the urge to launch into a paragraphs-long response to her seemingly innocuous, actually offensive statement.

I think I wrote something back along the lines of, “Nope! She’s probably just fine, but ask her doctor if you’re worried” and closed the message out.

Clearly this has stuck with me.

I’m sure that’s because I never circled back to tell her how the question made me feel. At the time, I didn’t want her to feel bad or to overcompensate for being a jerk; I just wanted her to… stop asking me questions immediately. But the result of trying to be careful about her feelings is that I haven’t stopped thinking about this one Facebook message. Like, ever.

My son’s cerebral palsy is mild. This doesn’t mean it’s not hard because it is: he faces daily challenges and being a little boy who has CP in a world that’s filled with ripped, able-bodied superheroes as inspiration isn’t easy on a child’s confidence or the paternal soul. He wears AFOs (braces) on his legs for a few hours during the day and again the entire time he’s sleeping. His muscles get tighter when it’s cold outside, and we have to ramp up our at-home stretches and physical therapy sessions at the hospital to combat it. Every time he has a growth spurt it’s like we’re starting over again because his legs and hips constrict and his ankles aren’t as loose as they should be.

But our journey is different compared to the journey other CP families are on, and we know it. We spend a lot of time being thankful that our son is able to do everything he wants to do. Sure, he might need to do it a little bit differently, but he can go hiking, ride a bike, do yoga. He has full cognitive function and reads like a champion. He’s a smart, inquisitive, awesome.

One thing he isn’t is dying or cursed with an affliction. He’s not an undesired child. His life is not a dark one, and having CP isn’t the worst sentence he could have received. I know no one goes into parenthood hoping their child will have a lifelong medical condition (and my son actually has three), but we didn’t greet his diagnosis with fear and doom, and his life is lived to the maximum because we believe in celebrating where you are while you’re there, for as long as you can.

So here’s what I want you to know about disabilities: this world is a spectrum. Living with disabilities can suck, but having a disability isn’t the end of the world, and it doesn’t have to mean someone is dying. In fact, it oftentimes doesn’t. Sometimes one disability is harder than the other, but consider this: there are a lot of people in the world just like my son. Kids who love Captain America and “Star Wars,” teens who spend too much time on their phones and can’t wait to live their own lives, and adults who are completely independent and wildly awesome. Implying that their lives are tragic or that they’re experiencing a worse-case scenario takes those glorious, beautiful lives and ignores all the light these people live with, despite their challenges. It ignores that these kids, these teens, these adults, these humans are people just like you, just like your kids. It ignores what is good about their lives, and instead emphasizes what is perceived to be bad.

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Disability Pride exists for a reason, and you’d do well to learn about it.

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When a Woman Undressed In Front of Me and My Service Dog

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Just after my 24th birthday, I was diagnosed with bipolar disorder and post-traumatic stress disorder (PTSD). My partner of two years broke up with me soon after. Feeling broken and worthless, I was hospitalized for psychiatric reasons.

Shortly after I returned home from the hospital, I started doing some research. It certainly wasn’t a surprise to be diagnosed with bipolar, but I’d never heard of someone having PTSD after a sexual assault. One thing led to another, and I discovered psychiatric service dogs.

Psychiatric service dogs are trained to perform tasks to assist their disabled handlers. There was a lot of information on American websites, but there didn’t seem to be a lot of awareness where I live in Australia. I started training my first service dog later that year.

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Robbi sits with her service dog.

What a lot of people don’t understand is that psychiatric service dogs aren’t just for emotional support — my first dog helped me through a lot of hard times. She interrupted self-harm, provided deep pressure therapy to ground me and guided me when I needed to escape from large crowds of anxiety-triggering people.

It didn’t take long until I realized the lack of awareness I’d noticed online translated into real life. When I was again admitted into a psychiatric ward, my service dog wasn’t allowed to stay with me, or even visit. I was angry. I knew legally she had every right to be with me, but I was hardly stable enough to argue with the people who where supposedly taking care of me. Thankfully, some of the nurses saw how much she helped me, and would look the other way a few times a week when my partner brought her in for visits.

After seven weeks in the hospital, I was released. I still had a long path to recovery, but now I had another goal: help people understand not all service dogs assist the visually impaired. 

Once I was sitting on a platform waiting for a train with Musa, the service dog I trained after my first dog passed away. A woman approached me and sat a few seats away. I saw her glance over a few times, look at me, look at Musa curled up next to me and look back at me again. Then without a word, she started to undress. She didn’t get completely naked, but changed from her work suit to her evening wear. Then, she sat back down like nothing happened. Shortly after I got up to check what time the train was coming, and read the information out loud.

Suddenly, the women leapt up and started screaming at me. She said I wasn’t allowed to have a service dog because “obviously I wasn’t blind.” Why hadn’t I spoken up when she was getting changed?

I quietly walked towards her, trying hard not to smile. I handed her an information card about psychiatric service dogs and gently said, “All guide dogs are service dogs, but not all service dogs are guide dogs. Perhaps next time don’t just assume my disability is vision related because of my service dog.”

I still have a good giggle about it to this day — it’s amazing what people will assume just because you have a service dog.

I’ve finally been able to step up my education methods, and now carry customized information cards I hand out to people who have questions. I have four different designs for different situations: some for kids, for when I’m in a rush, for when I have an access issue and a general combination of the three. I also have stickers, which I give out to kids who ask before touching Musa.

It’s important the public understand that service dogs are used for a range of disabilities. Not all disabilities are visible from the outside, but that doesn’t make them any less disabling.

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 To learn more about Musa the service dog, visit Robbi’s Facebook page

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What the Royals’ World Series Run Means to Our Daughter With a Rare Disease

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Dear 2015 Kansas City Royals,

October in Kansas City is blue this year. Again. So it seems only fitting to not only congratulate you for amazing achievements, but to thank you for what you’re doing for our family.

I’m a KC girl, born and raised. I don’t remember your World Series appearances in the 80’s, but I am certain my children won’t forget this one. For the last several weeks, my family has been mesmerized as you advanced. We’ve clapped, we’ve cheered and we’ve escaped into the wonderful world of “what-ifs,” if only for a few hours.

Six years ago, my daughter, Cambria, was born with a rare disease called panhypopituitarism, which comes with a host of complications like adrenal insufficiency, growth hormone deficiency, and in our daughter’s case, symptoms that even the world’s top doctors can’t diagnose. Her world right now consists of travel to the nation’s top hospitals, round after round of testing and daily maintenance of her medical needs. 

Early last season, we were in search of an escape, so we packed up our little family and headed for The K (or Kauffman Stadium for nonlocals). It was a perfect night at the ballpark. The weather was just right, the stadium was loud and the atmosphere was electric. Thrilled to attend her first baseball game, Cambria was wide-eyed and pumped up. Up until that night, Cambria was a loyal NFL fan, screaming at the television every Sunday. There wasn’t any room in her KC-born heart for any team but the Chiefs.

But that game changed things.

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Cambria fell in love with baseball that night, and I’m happy to say the affair is ongoing. She knows every player, their positions and can offer up opinions on why we’re winning or losing a game. Her commentary is always entertaining. Baseball is not only a welcome distraction in our home right now, but it’s an excuse to enjoy extra family nights when we need them.

Like every other family, we have highs and lows in our house. We struggle through rough patches, we have a lot of “away” games and, sometimes, we even pull out a win in the ninth. Lately, the lows have been more frequent as we struggle to find a diagnosis and treatment for symptoms plaguing our daughter.

We learned long ago our family is at our strongest when we work as a team. Everyone has their place on the roster, and our bullpen sees heavy rotation. We make our share of errors, but we’ve seen our share of saves, too.

Since Cambria’s diagnosis and subsequent complications, we’ve changed up our roster. We’ve brought in new talent, changed our strategies and had a few wins on the road. We’ve grown closer as a family and have learned to celebrate every stolen base and every sacrifice fly.

I’d be lying if I said I could remember who you played that night last May or if the Royals even won. All I can remember is that for a few hours, we weren’t a team battling a chronic illness; we were just a family at the ballpark, enjoying a game. Your team made that possible.

If you ask my daughter why she loves the Royals, she’s quick with a response. “They play hard and have handsome uniforms. They are my favorite baseball team because they never give up and are nice even when they don’t win.”

So from one team to another, thanks for bringing a little joy to our home. Thank you for giving us a reason to gather as a family and celebrate not just the wins, but the joy and love that shines through in the play of the game.

Good luck and godspeed. We’ll be watching.

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A Letter to Demi Lovato, Who Reminded Me That ‘I’m Enough’

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Dear Demi Lovato,

A few months ago I was listening to Z100 and they mentioned one of your recent performances where you kept saying the words “I am enough” right before you went onstage. You may not have expected anyone to overhear you, but I’m glad many of us did.

via Twitter

You see, when I was 5, a year after I was diagnosed with autism, my parents thought I may have an emotional disorder. I was lashing out because of my communication delays. My parents then focused on positive reinforcement while I worked through my therapies.

For me, my positive reinforcements, along with my parents’ unconditional love, is what gave me the confidence to succeed whether it be in school, therapy, you name it.

When you said those words — “I am enough” — it reminded me so much of my personal journey. When I was bullied as a child and having difficulties with my speech, I often though I wasn’t enough. As I grew up though I realized the challenges you face don’t make you any less, they just help shape you.

I was always enough, and that was an overpowering realization.

That’s what I now try to tell the people I mentor all the time. We all have those things in our lives that we excel at, and if we utilize them we can do remarkable things. We also — even if we sometimes don’t want to admit it — have those moments where we think we can’t do something.

So it was a refreshing reminder when I turned on the radio that day and heard your story. I went on to read more about your journey and learned how you’ve become a champion for those with bipolar disorder and mental illness. Your willingness to be a spokesperson for the means the world — both for people with and without a diagnosis.

It gives people like me a great deal of hope. We all need someone out there to remind us from time to time that we are capable. Thanks for being one of our reminders.

Your friend, Kerry

This blog originally appeared on KerryMagro.com.

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Why I’m Not Grateful to My Husband for Staying After I Lost My Eyesight

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My daughter’s christening was a monumental debut for both of us. She was being introduced as the newest member of our family, and I was coming out as her newly blind mother. After surviving the ceremony unscathed, my husband and I proudly carried our precious bundle into the celebration venue and handed her over to her godparents while we assumed our roles as hosts. He went one way and I went the other, bouncing from table to table knowing that if we finished quickly, we might actually get to enjoy the hot meal we were paying for.

For the most part, everyone I spoke with greeted me with a barrage of compliments. You look great. The baby is gorgeous. The food is fantastic. Occasionally, a guest would inquire how I was holding up since becoming legally blind a little over a year prior. It was nothing I couldn’t handle. I’d been mentally preparing for the inquisition for weeks. Just as I’d finished schmoozing my last table, an elderly relative grabbed me by the hand on her way back from the restroom. I politely answered her questions about my current medical status postpartum. I could, however, feel myself becoming increasingly irritated by her lack of sensitivity on the subject. Thankfully the conversation was interrupted by my infant daughter’s cries. As I moved towards the sound of my baby, the woman leaned in and whispered, “You must be so grateful to your husband for staying with you after going blind.”

Hearing her words made me wonder: Did she secretly represent the consensus of our guests? Had I misconstrued her elderly honesty? Grateful? Was I supposed to be grateful to my husband not leaving me after I lost my vision? On a day when I was supposed to be joyously celebrating all the things a person should be grateful for, I was suddenly distracted by three distinct reasons for why I was absolutely not grateful for having a husband who stayed.

1. We took vows.

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Call me naive, but in a not-so-distant past, two eternally optimistic young people decided to get married. We took vows. In good times and bad, in sickness and in health. Sure, no one knew on our wedding day that we would have to face the long and arduous journey of me losing my eyesight. No one has a crystal ball into the future. But when you sign on to be someone’s partner for life, you need to be ready to greet the unknown. It’s definitely easier to cut your losses and run, but if the shoe had been on the other foot, I know I’d still be here. The person I pledged my life to understands the gravity of the words “till death us do part.” I’m not grateful for having a husband who stayed; we took the same vows.

2. We’re still us.

Losing my vision didn’t cause me to lose sight of the person I am. At my core, I remain the same woman my husband fell in love with. On the day my world became permanently blurred, nothing was more painful than not being able to clearly see his face. Because that’s the face I look to for comfort when I’m afraid, and I was terrified. We both were.

My husband was my rock during those first difficult days, as he always had been. We made decisions about my treatment and rehabilitation together. My husband is my cheerleader, not my caretaker. Yes, our relationship has been uniquely tested, but the foundation it has been built upon can withstand anything. I’m not grateful for having a husband who stayed; my disability hasn’t changed “us.”

3. We’re role models for our daughter.

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There is something special about the relationship between a father and his daughter. Our little girl has had her daddy wrapped around her finger since the moment he laid eyes on her. My husband knows we’re the role models she will look towards when choosing a partner for her life. He takes that responsibility seriously. We both want our daughter to understand any relationship worth having involves effort and commitment between two people. Having a disability doesn’t change that. She will witness the peaks and valleys of our lives, but will become stronger knowing her parents could overcome anything together. Her daddy is special, not because he stayed with her mommy, but because he illuminates unconditional love for everyone he cares about. I’m not grateful for having a husband who stayed; we are equally responsible for being relationship role models for our daughter.

So here’s what I am grateful for: I’m grateful I chose to marry a man who’s in it for the long haul and meant the vows he said when he married me. I’m grateful for a husband who loves all of me, not just parts, but all. I’m grateful I chose a man who’s a good role model to his daughter. Hopefully, she will look for a partner in life who possesses the huge heart and strength of character of her daddy. I’m grateful for a husband who has never, not once, doubted my ability to be a good mother to our child despite being blind. I’m grateful for a man who’s intelligent enough to know my disability doesn’t define the woman I am.

Staying with the person you love if they become disabled shouldn’t require gratitude. The important parts of a person don’t change; what’s in their heart remains the same. My husband is not a martyr. He’s not a saint. He’s simply a man who honored his commitment to our relationship. He doesn’t need nor would he want my gratitude for staying, but he will always have my utmost respect for being the kind of man he is. Blind or not, I know we will never lose sight of our love for one another.

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